The Tap on the Shoulder
Everything begins with someone needing a kidney transplant. Perhaps you have a relative or friend who is suffering from end-stage renal disease, and you find yourself approached by that person about donation. Or maybe you read about someone needing a kidney on social media. Perhaps you are motivated to donate without knowing the recipient, knowing there’s someone out there who would benefit from your donation.
Whatever it is that got you to this point, how do you decide whether or not to be a donor?
It may seem obvious at this moment that you want to be a donor because someone you love is in need, you are moved by altruistic motives, it’s exciting to do something novel and brave, or all of the above. Please realize there are many things to learn and important issues to consider before agreeing to give away one of your kidneys. This is a big deal, maybe one of the bigger decisions you’ll ever make in your life.
Issues to Consider
Here are examples of issues to consider as you decide whether or not to donate:
- Will donation affect the ability to do my job (especially if I have a physically demanding job)?
- Do I have the financial resources available to cover time off from work for testing, surgery, and recovery?
- Does my religion have a position supporting organ donation?
- What impact might donation have on my relationship with the recipient? My family members? Friends?
- Who else might be considered as a donor? Is there someone else who is better suited to donate? How should we agree on who is considered first?
- Am I OK putting myself at risk when the potential recipient has other options available such as dialysis and deceased donation?
- Am I prepared to deal with the possible outcomes of the donation such as rejection of the organ or death of the recipient?
- Am I confident the recipient will do what’s necessary to protect the organ I donate such as taking anti-rejection medicines and making appropriate lifestyle choices?
- Am I prepared for major abdominal surgery including pain, the possibility of complications, or even my death?
- Am I comfortable with my motives for donation? Do I expect some sort of compensation, publicity, or pay back for donating?
- Do I feel I have enough information to make an educated decision? What questions do I still have?
- Am I up to it physically? Are there current aspects of my health that I know should keep me from donating?
- Do I have any concerns about what my physical appearance will be after the surgery?
- Do I have a “support network”—family and friends—to help me through this process, or am I doing it alone?
- How will I feel if I am rejected during the screening process?
As you can see, there’s a lot to think about!
Saying “Yes” Through Informed Consent
The first step in the living donation process after you’ve become aware of the need is to get in touch with the intended recipient’s transplant center. The transplant center is usually a teaching hospital — a medical center associated with a university. You will need to get in touch with the transplant team at the transplant center. The transplant team is usually comprised of a transplant coordinator (who will be your main contact), a transplant physician responsible for your physical evaluation, a psychologist or psychiatrist responsible for your psychosocial evaluation, and the transplant surgeon.
If you intend to make a non-directed donation (you don’t have a specific recipient in mind), you can call the nearest transplant center and ask about their living donation program. If they have one, they will put you in touch with a transplant coordinator.
Nothing moves forward in the donation process until you provide the transplant center with something called “informed consent, freely given.” That’s a legal term that means:
- You’re informed — you have been fully educated about the process, risks and benefits, and expected outcomes of living donation.
- You consent — based on what you’ve learned, you agree to be a donor.
- You do so of your own free will — you agree to donate without pressure from others or illegal incentives.
To this end, the transplant center will provide you with educational information on living donation. The educational information is often in writing but you might also be given the opportunity to attend a workshop. You’ll also have meetings and phone calls with the transplant coordinator and surgeon during which you can ask questions. Click here for a list of possible questions to ask. You can also ask questions on the LDO message board or on the LDO Facebook group page.
There are several other resources for general information on living donation. Here are some examples you might check out:
- A booklet, “Living Donation: Information You Need to Know”, published by UNOS. (This booklet is a PDF file requiring Adobe Reader on your computer or phone.)
- General information on living donation from the National Kidney Foundation.
- General information on living donation from UNOS.
There is controversy as to whether any potential living donor can truly give “informed consent” because of the absence of universal standards guiding living donor transplants and the relatively small amount of medical research on the long-term consequences of living donation. To address this issue, UNOS developed the Living Donor Informed Consent Checklist. The purpose is to get greater standardization in what potential living donors are told by transplant centers prior to agreeing to donate. However, there is no requirement for a transplant center to adopt these guidelines.
In the U.S., Medicare also includes minimum requirements for informed consent. These requirements technically must be met for the transplant center to maintain eligibility for Medicare reimbursements. More recently, a group of medical professionals called Kidney Disease: Improving Global Outcomes (KDIGO) published suggestions for attaining informed consent. If you’d like all the detail, you can see their suggestions on pages 33 – 37 of this document.
The best source for knowing what you will need to agree to is the informed consent material provided by your transplant center. If you’d like to see what other transplant centers do, here are some examples:
- Cleveland Clinic Consent for Living Kidney Donation
- Oregon Health and Science University Informed Consent for the Living Kidney Donor
- Boston Medical Center Informed Consent to be Considered as a Living Kidney Donor
Once you’ve read through the material, you are asked to sign it. If you don’t fully understand or agree with something, do not sign it. Why not? Because you are technically not fully informed, which is required for “informed consent.” In the case of living donation, ignorance is not bliss; it’s dangerous. Only after you understand everything should you sign the document.
Once you have provided a signed informed consent document, the evaluation and testing process will begin. (More on that later.) There are also several steps you should consider taking to get yourself ready for donation. “Being ready” means:
- I am intellectually ready: I have studied living organ donation, and I understand the process including the risks involved.
- I am emotionally ready: I have prepared myself emotionally for living donation, including the possibility that the donation may not be successful and that I may be harmed in the process.
- I am physically ready: I am in great physical shape because I need to withstand major surgery, I need to have a healthy organ to donate, and I need to continue to live with one kidney.
- I am financially ready: I have the financial resources such as savings and paid time-off (vacation, sick days, short-term disability, etc.) to tide me over while I am being tested, in the hospital for surgery, and away from work while I recover. I also have insurance protection in the event I die, am disabled, or have ongoing medical needs following donation.
- I am spiritually ready: I am driven to donate by the right motives.
There is much more for you to do besides the education you undertook to provide informed consent.
> Talk To Someone
Research into the experiences of living donors shows that potential donors are better prepared if they have access to support groups, educational seminars, others who have donated, and sessions with a transplant social worker.
It is standard practice for a transplantation team to make a social worker or counselor called an independent donor advocate (IDA) available to you. This person is a separate resource for you and is not a member of the transplant team. Their role is to make sure your rights as a living donor are protected and fulfilled. They are your advocate if you feel you need something from the transplant team that you are not getting. They can be a sounding board for you if you just need to talk through issues. They can discuss topics such as the transplantation process, medical ethics, informed consent, impact on personal relationships, pressures you might feel, doubts or guilt you might have, and financial concerns. They can help correct any misperceptions you might have, confirm your motives, set appropriate expectations, and steer you to additional resources. The IDA represents your interests to the transplant team and helps you reach a decision that is fully informed and free of coercion.
You might consider reaching out to family members, close friends, a religious or spiritual guide, your personal physician, or someone who has gone through this process. This can be a time of high anxiety. Potential donors report concerns about the recipient if they don’t donate, anxiety about the testing and surgery, and guilt if there is not a match or if the transplant fails. Therefore, it’s important to reach out to people you trust who can help you with the emotional part of donation. There are resources right here on LDO: you can request a “Living Donor Buddy“, who is someone who has already been a living donor and has volunteered to help potential donors. The LDO Message Forum and Facebook group are additional sources for support and information.
> Plan Your Finances
Finances are a major issue for most potential donors. Generally, medical expenses related to the transplant, such as the cost of testing and surgery, are covered by the recipient’s medical plan.
Important: confirm with the transplant coordinator and the recipient’s medical plan that you will not be charged for medical expenses. Get that confirmation in writing. Do not give your medical insurance information to the transplant team, hospital, or recipient’s insurance plan. (It’s OK to confirm with them that you have health insurance, just avoid giving them details like your plan ID number.) You should not have to pay for any medical expenses related to the transplant testing and surgery, so they don’t need your insurance information.
While medical expenses usually are covered, travel, living expenses, child care, and lost wages from taking time off for testing, surgery, and recovery are not covered. Therefore, you will likely need personal savings plus benefits from an employer (paid vacation or sick leave, short-term disability, and long-term disability) to cover living expenses. In all countries except Iran, it is illegal to be paid for donating an organ. In the U.S., an exception is allowed for “reasonable payments” to the donor for “travel, housing, and lost wages incurred by the donor of a human organ in connection with the donation of the organ.” Also, some states provide for a tax credit to lessen the financial burden of living donation. A list of states can be found here.
Technically, living organ donation surgery is not included as a qualifying event for job protection and up to 12 weeks of unpaid leave as provided in the U.S. by the Family and Medical Leave Act (FMLA). However, there is an Opinion Letter issued in 2018 by the Department of Labor that says living organ donation can qualify. An Opinion Letter does not carry the same weight as law so some employers have not followed that interpretation and denied FMLA eligibility for potential donors. (Note that FMLA does not apply to employers with fewer than 50 employees.) If you find yourself in a situation where your employer is denying you FMLA eligibility, share the Opinion Letter. You might also contact your U.S. Senators and House representative and ask for help.
LDO has prepared a spreadsheet to help you estimate these expenses, as well as share information on organizations that can assist you with covering these out-of-pocket expenses and lost wages. The details are found on this separate LDO web page.
Be sure you have medical, life, and disability insurance to protect you and your family in the event of complications following donation. You need insurance protection now in case any complications you have later affect your ability to get insurance. If you need assistance with insurance, the American Foundation for Donation & Transplantation offers coverage. You can learn more about this special insurance for living donors here. If you donate through the National Kidney Registry, they also have an insurance program called Donor Shield.
You should also review your last will and testament, living will, and durable power of attorney for health care. The last will and testament describes how you would like your assets distributed in the event of your death. A living will describes the kind of health care (or rejection of care) you would like in the event you become incapacitated. Finally, the durable power of attorney for health care appoints someone you trust to make decisions about your health care if you are incapacitated and can’t decide for yourself. Make sure you have these documents and that they are up to date. If you don’t have them, contact an attorney for help.
> Get a Support Network in Place
Get your support network in place–spouse, family, friends, etc.–to lend a hand while you are testing, in the hospital, and recovering from surgery. You may need help with the house or apartment, watching the kids, taking care of pets, driving you around, cooking, cleaning, and so on. There will be at least a couple of weeks when you’ll need help. You can’t do this alone, so make sure you have people who can help you.
> Confirm Your Decision
Finally, after you have educated yourself, considered all of the issues associated with donation, and looked at what it will take to be prepare, decide whether donation is right for you.
Generally, living donors feel honored to be considered, and the vast majority (96%) who have donated would do so again. Donors report a higher quality of life, perhaps linked to a greater sense of self-worth and self-image as a result of donating. Interactions with the organ recipient and his or her family become closer or remain the same in most cases, regardless of the relationship to the recipient. Donors also report they feel good when they see an improvement in the recipient’s health as a result of the donation.
However, there are reasons not to donate. The financial strain my be too great. You might feel you’re being pressured into it. Your own motives may be misguided, particularly if you expect compensation. If you decide against donation, you can work with the transplant coordinator for a graceful way of backing out. For example, they could find a confidential medical reason for you to be disqualified. There’s no reason to be ashamed, especially if you’ve had the opportunity to educate yourself and think through the issues.
If you decide to go forward with donation, you can sign the informed consent form, but it’s still not yet certain that you’ll be able to donate. You need to be evaluated as a potential donor, which is described next.
By the way, if you have problems with the transplant program for any reason, UNOS provides a patient service line (888-894-6361) to report concerns about the transplant program or the general experience with transplantation. The patient services staff can be reached by phone from 8:00am to 5:00pm Eastern, Monday through Friday. You can also ask questions by sending an email to firstname.lastname@example.org.